Hi everyone
On 31st August 2021 I had a bladder neck incision operation to help with weak urine flow, hesitation, voiding and urgency. I've had these issues for as long as I could remember (age 25 at least) and it just got to the point it was affecting my life too much, and so I did the BNI.
As soon as I had the BNI my flow was better but I completely regretted it. I got partial retrograde ejeculation and sexual activity just turned into a painful climax, so I had to write off that activity from my life. It seems there was no PSA test done before my op because there had been no reason to. In 2014 my PSA was 1.5 and a digit test in 2021 showed no issues.
Fast forward to 9th Nov 2022 (1 year and 2 months after my BNI) and I have an MRI to check a potential gallbladder issue, and they find mets in my lymph nodes, pelvis bone and lower spine. A followup PSA test showed 990 and a second one from Saturday is 981.
I've been passed between consultants (gallbladder, blood oncologist, urologist) and on Thursday this week I go for a CT assisted biopsy on one of the lymph nodes they think they can reach (at least 15cm in from torso). I then go on to a new oncologist for metastatic prostate cancer (if biopsy confirms it).
The urologist did a digit test a few days ago and found no firmness in my prostate, it was "squidgy all over" in his words which apparently has him stumped. I asked about the BNI and apparently that would have only elevated my PSA for a short time after my op last year.
So at age 50 it looks like I'm joining the ranks here with a sudden knowledge of advanced PC, and I start my journey on treatments. I have already started on Bicalutamide tablets (2 taken so far).
I am fairly calm about it in my own mind, my quality of life dropped significantly since my BNI and perhaps the aches and pains I've had over the last year have actually been related to the spread of my cancer. I've had quite a few nights before my PC diagnosis where I would lie awake with abdomen pains wondering if there was any point going on, and now I've been handed a for-real chance to die in the comings years.
Of course it's not all about me, my wife and 15 yr old daughter and my wider family will suffer far more than me if I were to pass. Most of them I've told already, but I've kept it from my daughter so far.
I have good Bupa coverage through work and so far they've been great (just taking a while to get the diagnosis locked down), but my mum is asking me every day to try to get myself to the royal Marsden in London for the best treatment options. I'm just waiting for the biopsy result and then maybe I'll ask Bupa if I can be seen at the royal Marsden.
It seems like every day there is news about a new treatment being worked on or even tested, so I will try to seek out whatever I can, and would appreciate any advice from the community here.
Thanks in advance